Should I start on adalimumab: Hi all, I've had RA for... - NRAS

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Should I start on adalimumab

jayh profile image

Hi all, I've had RA for about 25years and after a few poorly years have been relatively stable on ( mostly)25mg Mxt, with a knee replacement and wrist surgery along the way. Since December I have been having fairly regular flare ups, one of which put me in A & E with a high CRP level & severe pain. The rheumatologist has suggested I could go on to adalimumab 'if I want to' , however I felt he was a little bit dismissive when I said I wasn't sure.He gave me a leaflet and said to see if things settle down. Well things haven't settled down and I am just wondering what other people's experiences are with this drug? The side effects sound worrying to me and I don't feel I have enough information to make a decision.

22 Replies

Hello jayh

I have had RA for just over twenty years, and went through MTX, Sulfasalazine, Embrel, Leflunomide,Etanercept,Rituximab and Sarilumab, apart from MTX and Embrel which were effective but knocked my platelets for six, the rest of the Biologics have been a waste of time for me and have caused a lot of damage.

I pushed my Consultant to let me try Adalimumab which is an ANTI TNF similar to Embrel.

I know what you are saying about side effects, but I had to ignore them and see what happens, my first blood count was a little abnormal, but I will wait until the 9th June for my second blood test to see if the situation has improved or otherwise. I have been injecting since late March 2022, so far no obvious effects, I guess watch this space.

Regards Colin

jayh profile image
jayh in reply to Collywithra

Thanks Colin

I started it a few months ago. Haven't noticed any side effects, not sure how well its working

I'm sure your Rheumatologist would not have suggested you go on Adalimumab if it was not thought necessary/likely to help you as all the biologic drugs are very expensive!

The high CRP result and pain levels you are experiencing show that your RA is not under control and doing permanent damage. You definitely need to get the RA under control and a biologic drug may be the best way to do that.

Don't be put off by the list of possible side effects - I have tried several biologics and had far fewer side effects on those than on methotrexate and sulfasalazine! I had no side effects on Adalimumab at all.

A biologic drug may be just what you need so do try Adalimumab, and I hope it works quickly and well for you.

jayh profile image
jayh in reply to Lolabridge

Thank you that's really helpful

I have been on Adalimumab since 2006 with no side effects. If you are in pain and have been offered it, why not give it a try, you don't have stay on it if the benefits don't outweigh the side effects for you. For me it has been superb.

I have had RA for 33 years. I have been on Leflunomide and Humira, 6 mg prednisone for last 12 years. No side effects. The disease is manageable. Working 40 hours a week and still exercising. I am so grateful for the quality of life.

CJFC1717 profile image
CJFC1717 in reply to ragurl

Are you still on Steroid after 12 years

I was on adalimumab (imraldi) without major side effects, but unfortunately it wasn’t the right drug to manage my arthritis.

It’s always worth bearing in mind that quite literally any side effect reported whilst someone is taking a med is included in the information: side effect lists are correlative, not necessarily causative. That’s why even normal saline, literal saltwater, has a list of side effects in double figures. I have a number of health problems, and if I based the decision to take the various meds I do on the potential/listed side effects, I wouldn’t feel comfortable taking any of them. It got to the point that I’ve now stopped looking beyond making a mental note of any that state immediate/urgent action is required if they happen. I didn’t tend to get much in the way of side effects before, but I seem to have even less now. The nocebo effect is very real, and very powerful.

Always feels difficult when not in total control of our treatment.Problem is we're not in total control with our bodies doing their own thing.

I was in shock when first diagnosed so took me a bit of time getting my head round the treatment.

Once I'd researched to my satisfaction and had a good chat with the RA nurse and started treatment.

Suggest seeing if you can chat with the RA nurse their job is to discuss care plan etc.

Doctors diagnose and prescribe.

I deliberately don't read all the side effects to avoid suggestibility of the side effects. lol

In the end all you can do is try it see if it works, if not then you can go back to the drawing board as it were.

All the best :)

I can only speak from my personal experience but I started on Amgevita/adalimumab almost 2 years ago when my usual methotrexate and hydroxychloroquin drugs were unable to keep my RA in check. I continued with them and added Amgevita to the mix .. and the improvement was almost immediate. The pain and stiffness would start to return before my next Amgevita injection was due but this stopped after about 6 weeks - when the improvement became permanent 😁 Almost no pain or stiffness at all now unless I overdo things. Still have occasional days where I feel exhausted 🤷‍♀️ In the last couple of months I have been able to reduce my methotrexate from 20mg to 15mg … and still doing well. Not suffered any side effects that I’m aware of and have bloods checked every two months at hospital blood unit. Good luck with your journey 👍

It's the only thing that has worked for me. I would say go for it. If it doesn't suit you, you can always stop it.

Adalimumab was actually the first drug I was put on nearly 3 years ago, and it's honestly changed my life. My arthritis issues are mainly in my SI joints and before I started taking it, I would have lots of days with intense pain and muscle spasms, I couldn't walk properly or bend down to put my knickers on in the morning. Now I barely have any of those symptoms at all. I was worried about the side effects too at first but the only side effect I've had is a bit of tiredness the next day. It does suppress your immune system, but that hasn't been a huge problem for me. I just make sure I have good hygiene and don't meet up with anyone who is unwell, as well as wearing sun cream.

I would say it's worth trying for a few months, you can always stop it if it's not for you. If you do try it, I would recommend doing your injection in the evening. Once I've done mine, I get very tired. And to make sure you take it out of the fridge for an hour before, it makes the injection less painful. It's not hugely painful on the whole anyway, but every little helps!

May I ask, is it a must that a person takes Methotrexate with a Biologic? or can a Biologic work on its own?

bpeal1 profile image
bpeal1 in reply to MJSlide1958

The methotrexate prolongs how long the biologic may work for (biologics are proteins which your body can make antibodies against) however, some people take biologics on their own. Alternatively I can't tolerate methotrexate so I take leflunomide with my biologic instead - my rheumatologist says the leflunomide will do the same job as methotrexate.

MJSlide1958 profile image
MJSlide1958 in reply to bpeal1

Thank you very much.

Hi there, completely understand your dilemma - I was offered Adalimumab too several months ago but information was lacking which (among other things( made me reluctant to take that step. This is just my choice but I decided to try escalating treatment via non-biologic routes first. I was taking MTX and HCQ and am about to start triple therapy with sulfasalazine. If you're prescribed MTX alone at the moment could it be worth discussing with your consultant whether there are any alternative options before deciding? It is so hard when you feel as though you don't have the information you need to come to an informed decision. Wishing you all the best with this.

jayh profile image
jayh in reply to virtualreality

Thanks for your reply. I started on sulfasalazine right at the start but had to stop after a few months due to side effects and have also had hydroxycloraquin along the way but unfortunately can't take this now due to an eye condition. I think I may just have to consider taking a leap of faith!

For me it has been wonderful! I only started it in November last year, but had improvement very rapidly with the boggy swelling around my joints resolving and being able to make a fist for the first time for many years. Whoopee! I can even open (some) jars. It is so good not to have constant pain in my hands, wrists and costo-chondrol joints. I do have other problems (like with my back and feet) but they are not to do with the Rheumatoid Arthritis but with aging and osteoarthritis.

I haven't had anything in the way of side effects except for an increase in the amount of sticky mucus produced by my nose and apparently a small rise in my cholesterol (which is fine otherwise). I have had remarks about large red blood cells in my blood film, but I had that before I even started it and I'm also on azathioprine which also causes that - and my B12 and Folic Acid are fine, so no worries.

Everything you take will cause some sort of alteration to your body (or it wouldn't be doing anything would it!!!). It's a matter of balance and getting the benefits outweighing the disadvantages.

Hello jayh, adalimumab has been really effective for me. My joints improved very quickly and I’ve had no side effects. Appreciate that different drugs work for different people but this one has been life changing for me! My personal advice would be to give it a try.

Having had RA for 40 years and trying a lot of meds over that time…..I decided quality of life was for me, rather than quantity after reading the many side effects on most of the treatments. For me that was the right thing and I have my life back with manageable pain…albeit being immunocompromised. So really it is weighing up the pros and cons for you. Take care

I have been on Actemra (tocilizumab) for 3 years and it has worked well. It was started by my rheumatologist to treat polymyalgia rheumatica (PMR).

There was a shortage of Actemra late last year and early this year. My rheumatologist didn't know for sure what to do because there aren't many alternatives for PMR except for prednisone. Actemra isn't even approved for the treatment of PMR but my rheumatologist had "a hunch" that it might work.

My ophthalmologist is not a fan of Actemra and says it isn't "optimal" for the treatment of uveitis. I also have reactive arthritis along with uveitis in addition to PMR so my rheumatologist agreed that Humira (adalimumab) might work. I tried adalimumab. It might have helped uveitis but the pain returned and I ended back on prednisone until the supplies of Actemra improved.

My position in regards to biologics is that you will never know unless you try them. There is no predicting what will and won't work. The nice thing is that you only need to try them for a few months to know if they work or not. My rheumatologist said I should give adalimumab at least 4 months to know if it works or not. So now I know it doesn't work very well for me.

That doesn't mean it won't work well for you.

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